I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
To send me a private message, please e-mail me: flylittlewordsfly@gmail.com
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Monday, 30 April 2012

Tired Today

Today was the first day in a week that I woke up tired. I mean beyond the norm. The new norm. Do you know what I mean? I'm not sure I know what I mean.

Since November 2008, my sleep has been less than refreshing, overall. But within that, there is a huge variance, and I can usually tell what kind of day I'm going to have by how my body feels those first few moments of waking. The last couple of weeks, since I moved home, I have felt awake faster, and lighter. I was surprised the other day when I got up and without even thinking about it, just reached into a drawer to get dressed. I have gotten rather used to thinking about it - calculating how much energy I have, and what my day will bring, what the chances are that I will be back upstairs before I leave the house, and so forth. But I didn't have to do that this week. That's pretty awesome.

This morning, my wrists and ankles were heavy, and it took all the effort in the world to roll over, never mind get up. And I'm glad to say it was a surprise! And also, I'm absolutely sure I know why.

Saturday, 21 April 2012

My Week in a Wheelchair

I am lucky. I can walk. Most of the time, and short distances, but in my daily living, I can take care of my own transportation. Sure, sometimes I need my cane, and other times I can make it just as far as the driveway, but I can use my legs just fine. I have been in a wheelchair a few times the last couple of years, usually when I want to go somewhere with my family that would require walking longer distances - like a museum, or to Harbourfront. I'm in it for an hour or two every few months. Nothing more. Like I said, I'm lucky.

But in San Francisco, I was in a wheelchair most of the time that I was not in the hotel. We stayed in Fisherman's Wharf, which is the very touristy part of the city, and very walkable. And so I got pushed around as we did our sightseeing, and when I joined my family for dinners out. It was a most interesting change of perspective in many ways.

Using a cane and being limited in so many ways, I am more aware than I used to be about accessibility and people's compassion (or lack thereof) and helpfulness. But it does not compare to seeing the world from a sitting position, and ceding control of my movement, speed, direction, and therefore experience, to whomever is doing the pushing. For the most part.

Tuesday, 17 April 2012

Trees of Life

I do not believe in coincidence as being a random convergence of events. I believe in co-incidence, as in a significant, yet unplanned convergence of events. There is no doubt in my mind that this is what happened this week, in my being in San Francisco with my aunt Cuq, while the Do Not Destroy: Trees, Art, and Jewish Thought exhibit was on at the Jewish Museum here.

I am drawn to trees. Always have been. I even have one drawn on me. Permanently.

Most spiritual paths have a connection to trees. In Judeo-Christian traditions, we have the Tree of Life and the Tree of Knowledge. Christianity espoused Pagan traditions by bringing trees into the home during the winter months. First Nations peoples have spoken to trees, and honoured their wisdom for longer than anyone knows. Druids, Wiccans, Pagans and all the nature-based paths have special connections to trees, and Buddha gained enlightenment under a tree. Trees are older than we are, and will be here hopefully long after we are gone.

Saturday, 14 April 2012

I forgot about my brain!

It figures, that when I wrote about my doctor's visit, I forgot about the part related to my brain. Not exactly coincidental... right?

He mentioned that in Canada, we don't do SPECT scans for diagnostics, and he is right. The only brain image I had done was at the request of a neurologist I saw in my earliest stages of illness, and it was a normal MRI. Never done a SPECT scan, and probably never will. So I won't get to satisfy my personal curiosity about my own brain. Ah well.

But there is increasing research into how ME affects the brain, and it shows up in SPECT scans, which apparently measure blood flow, or something like that. What my new doctor said is pretty much that he suspects if they were to do such a scan on me, they would find abnormalities, which would make sense out of a lot of my neurological symptoms. Like the brain fog, the aphasia, the cognitive impairments, and the lack of stamina when it comes to concentration.

I like brain stuff, so I want to learn more about this. And I will. Just not now :)

In any case, as far as my treatment is concerned, there is no point in even thinking about my brain, because the adrenals are the first thing, along with the methylation (which is also brain-related) that have to be addressed. And we're already doing that, so what comes next will come.

Again, what's wonderful about this is the validation. There is a reason that my brain conks out after a little while, or when I try to multi-task. There is a reason why I suddenly can't think of the right word. There is a reason I forgot that he even mentioned my brain. And there is definitely a reason that I have trouble with too much sensory input. The doctor said so...  And much as I already knew so, it is really nice to be validated by someone with so much experience in the field.

Wednesday, 11 April 2012

A New Doc, A New Hope

Yes, the Star Wars reference is purposeful, and if you didn't get it, then you can't have a conversation with my nephew :)  ... and let that be an indication on my mindset, coming out of my first meeting with my new doctor, for which I have traveled real nice and far, to what feels like a galaxy far far away.

So first things first - I am not dealing with mold or other biotoxicity (Yay! I get to go home!!!!). While I already knew that my illness had a viral onset, it seems that it also has a viral cause. The question then becomes whether the initial virus has stayed in my system and keeps reactivating, or whether it just whacked things so out of balance that it has taken me this long to get over it. The doc says it honestly doesn't matter so much in terms of treatment, though he did test for the more likely suspects, and once those results are in, he will decide which course of action is best for me. In the meantime, the big things to balance out are my adrenals and thyroid.

Saturday, 7 April 2012


The airplane ride was much easier than I imagined it would be. My time in the airport went very quickly. The getting to California, the voyage itself, was really, surprisingly, easy, and does not seem to have led to any kind of exhaustion. YES!!!!!

So far, of San Fransisco, I have seen Fisherman's Wharf, Ghirardelli Square (sp???) and the hotel. And I have to say, I am really enjoying being somewhere different. I've always loved to travel, and being sick has not changed that in the slightest.